Category: Comorbid conditions

Getting back into the swing of things.

I feel like I haven’t written anything in ages! Partly that’s true. I haven’t posted for over 2 months. But I have been writing a little.

There’s a host of reasons for why not. Some of them good, some of them…. not so much.

I’m battling yet another new health issue. It never seems to end. I’ve written a lot about gut health and dietary things, and until recently I had my IBS under control. At first I thought it was because of a little too much sugar and grains sneaking into my diet over Christmas, but getting strict again didn’t resolve it this time. So I think something else is going on, and it’s causing me a massive amount of gut pain and digestive issues.

Of course, all of my initial test results have come back normal, so now I’m booked in for a colonoscopy – fun times ahead – not! I guess you can all look forward to a blog about that!

I’ve also been battling the demons in my head again. It’s not unusual when a new health issue arises (or an old one just gets too much) for mental health to take a bit of a dive again.

I’m going to take a little detour around that and come back to it in a moment.

The ever tolerant Knight in Tarnished Armour and I have been renovating for what seems like forever. Some of the things we wanted to do got put on hold when I got sick. It simply didn’t make financial sense to borrow money for mostly aesthetics when we really didn’t know if I was ever going back to work.

We’ve diligently saved up and worked out cheaper ways to do things, and studiously ignored the unfinished and unpainted bits. But now we are getting some of the things done! Yay!

Part of the reason for this is that I got myself registered as a Marriage Celebrant and have been setting up my home office sorted and doing all the things associated with setting up a new small business. I’ve got a couple of weddings booked and I’m super excited about this new adventure.

Now I’m never going to make a massive amount of money doing this. But it’s a job I’m already loving – possibly as much as I loved being a vet! And it’s much more manageable energy wise.

But the renovations has included getting some painters in to finish painting the places that we started. Now I actually don’t mind painting. It’s a task I used to help with when I was a kid. My tiny kid hips would fit between the handles of a ladder so I could happily sit at the top, and monkey up and down painting the cornices of a room, while my vertigo affected mother tried not to watch!

As an adult, I can remember painting half a wall before work, heading off to do a full shift as a vet, then painting the other half when I got home. So getting people in to paint walls really triggered the FibroTroll to bring over all the mental health friends (co-morbid conditions) and along came all those feelings of guilt, inadequacy and depression. Combined with the new health issues. I’ve really been struggling.

So I’ve been back to my psychologist, who again has proved her worth. I’m in a much better frame of mind – and that’s probably the reason I’m back here.

We talked about a lot of things. I was reminded to get back into my meditation, yoga, writing – all the things that I know help, but then start to forget when things take a turn for the worse.

But the big thing we talked about was priorities. Everything we do in life requires an allocation of resources. It might be time, it might be energy (physical, mental, emotional, spiritual) and it might be money. And how we choose to prioritise those resources is up to us.

Back when I was well, the limited resource was usually time. As a university student, it was usually money. Now, it’s energy. I’ve got loads of time. I don’t have loads of money, but I’m super lucky that the Knight earns enough that we are comfortable. But energy – oh that precious, precious resource!

So now I’m sitting at my dining table with my laptop, while a very nice man is sanding and filling gaps and cleaning and prepping my front room. He’s going to paint it later today and tomorrow and then my new office will be freshly painted and looking lovely.

This is something that I can do. I have the knowledge and skills to perform this task. (Probably not as good as the painter’s skills.) But it would literally take me weeks or months. He’ll be finished tomorrow – and do a better job. And that energy that I would use on that task will simply not be there for anything else.

I won’t be able to cook, do the washing, write blogs, meet clients for weddings, do gardening or any of the other things that compete for my energy resources. My energy is already lower due to the new health issues and needs to be saved for looking after me and the Knight.

The Knight hates painting, so he doesn’t want to allocate his time and energy to that task. He also doesn’t much enjoy cooking and cleaning (although he does do those anyway) and very much does not like watching me in pain.

So instead of feeling guilty about this, I have re-framed it as a choice. Instead of allocating the resources of my time and energy into the painting task, I have chosen to allocate the resource of money – to pay someone else to do it. The priority for both the Knight and me is that I keep my energy for the other tasks, so that I don’t collapse in a heap and he has to take time off work to care for me. And the big break-through that I have had this week? – I’m ok with that choice.

(Not so) fun times with endometriosis (addendum).

So I thought I was done with my series on endometriosis. But I was wrong! I decided to add this post tacked onto the end. If you want to read the whole series, I’ve linked them at the bottom of this post.

This entry is not specifically about my surgery, but it hopefully contains some helpful information regarding the ongoing management of endometriosis. Unfortunately, having the lesions removed, does not always lead to a permanent cure. So ongoing management is important to reduce symptoms, and hopefully avoid the need for more surgery in the future.

There currently is not nearly enough awareness and support available for people who suffer from these sorts of conditions. And many of us are simply unaware of the support that does exist.

One of those support groups is Qendo. Qendo is an organisation that provides information and support for people suffering from endometriosis and other chronic pelvic conditions. They have a 24 hour support line and a host of information on their website. It started off as the Endometriosis Association (Qld) Inc. and now supports women all over Australia and the rest of the world.

They run regular information nights, fundraising events and general meet-ups. I recently discovered Qendo when I went to one of their information nights discussing gut health and endometriosis.

Now, if you have been reading my blog a while, you know that I am a big believer that gut health and nutrition are incredibly important when it comes to healing. This was the focus of this information evening.

I do want to do a little happy dance here – I did a thing! at night! in winter! This is not something that I’ve been able to choose to do for years. The FibroTroll leered a bit, but my faithful tarnished Knight was my chauffeur, and I took it easy the following day and the toll wasn’t too high – hence the happy dance!

Dr Lara Briden was the speaker on this particular night, and she was interesting, entertaining and informative. I learned that endometriosis may actually be an autoimmune disease, which may explain why the severity of endometriosis lesions does not always correlate with the severity of symptoms.

She has written a book called “The Period Repair Manual”. It is a well set out, well written book that gives enough technical information for the nerds like me, but written in an easy to follow way. It’s full of things I wish I had known 20 years ago. I strongly recommend you read it if you have any period issues at all. If you wish to purchase a copy, it can be found in Qendo’s shop or you can access the first 2 chapters by signing up to Dr Briden’s newsletter here.

This book has a host of information regarding diet and supplements to help manage a huge range of period-related conditions. Many of the recommendations are things I am already doing, but I definitely learned a lot reading it.

***

To add to the already amazing work that Qendo already do, they are now in the process (in conjunction with Queensland Health) of developing a mobile app to help support people with endometriosis and other conditions.

I attended a workshop today to give input into that app. It’s still in the early stages of development but so far, it sounds amazing! It’s going to make tracking and managing symptoms so much easier. I believe it’s even going to be comprehensive enough with only small need for customisation for me to use it to manage the FibroTroll!

If this is something that interests or affects you, please take a few minutes out of your day and complete this survey –

https://www.surveymonkey.com/r/QENDOAPP

Anyone in the world can do the survey, so if you suffer from endometriosis or other pelvic pain conditions, please fill it in.

I am very excited about this app, and look forward to being involved in it’s development and testing. I will certainly be writing about it again in the future!

The first four parts of this series on endometriosis can be found here: Part One, Part Two, Part Three and Part Four.

(Not so) fun times with endometriosis. (Part Four)

I am finally writing my fourth (and I think last) instalment of posts about my surgery for endometriosis earlier this year. It’s been a long time coming, but that is in part because I have been incredibly productive in other areas of my life – yay! But that is a whole other post.

Previously, on Living With the Fibro Troll….

In part one of this series I talked about what endometriosis is, and how the hospital system works in Australia and what to expect prior to surgery.

In part two I gave some advice for practical and helpful (I hope) things to do in preparation for surgery.

In part three I talked about the initial post operative period both in the hospital and at home.

EDIT: I added an addendum recently to include a book and a support group recommendation.

***

This part is about the more extended post-op period. The first few days are not much fun, but if you keep on top of your pain relief, manage not to get constipated and make sure to rest, in some ways they are easier than the next couple of weeks.

Our society seems to have gotten into this “just power on” mentality. The idea that you should push through the pain and that taking time to rest is somehow “wasting time”. Everyone, especially FibroWarriors or anyone with chronic health conditions, needs to ditch this idea. Particularly post surgery.

Your surgeon might give you instructions to “go back to light duties” within a few days after surgery. This is fine advice, but doesn’t take into consideration that chronic illness suffers often have prolonged recovery times from ANYTHING and also often have less conditioning so will take longer to recover.

Do not expect to be able to go back to your regular routine straight away. It can be weeks or months before you are back to normal and it can take several cycles for your period to normalise.

GIVE YOURSELF PERMISSION TO REST!

The little incisions on your abdomen might not look like much, but they are just the access points. Your abdomen has been inflated and stretched and poked around in. Endometriosis lesions were removed, and they can be from anywhere and could be extensive. All of those excision sites need to heal.

If, like me, you have endometriomas removed from your ovary/s, then your hormones may be affected. In fact, you will have increased cortisol to deal with whether or not your ovaries were involved. You have to process the anaesthetic drugs and the pain relief drugs.

And then you still have to deal with the FibroTroll. The FibroTroll doesn’t take holidays, not even if you have surgery. So rest. Then rest some more. Even if you are bored witless. Rest.

***

Move your body.

This kind of sounds like that opposite to what I just wrote, but I am NOT saying to go for a run or to start lifting weights.

However, some movement is essential for healing. Your lymph system does not have a pump like your vascular system does (your heart). You need to move so that your lymph can move also. This is super important for your immune function.

Set a timer and every hour – stretch. Stretch your arms, point and flex your feet and make circles with them, roll your shoulders, turn your head gently from side to side. Give yourself a gentle massage, and if you have someone willing, get them to massage your lower legs with firm strokes up your legs. While they are down there, there’s a reflexology point between the ankle and the heel that when pressure is applied can help some people with uterine pain.

As you heal, SLOWLY increase your activity. Keep your timer for every hour, and every second time, get up and walk a short distance. By short, I mean wander slowly around the house, maybe go out to the letter box if you have a low-set house and you live in a regular sized suburban property. Then GO BACK TO RESTING. If you have to do household tasks like cooking and cleaning, do it in stages and rest in between. This counts as movement, and will use energy. Allow for that.

***

Dealing with referred pain.

Your body is an amazing, complicated, confusing thing. It will heal those incisions that were made in your skin. There will be a small scar, but it will heal. It does, however, sometimes do some strange things.

Remember how I mentioned that the surgeon will fill your abdomen with gas so they can see what they are doing and get to the bits that need removing? Well, they do the best they can to remove that gas at the end, but they generally won’t be able to get all of it out.

There’s no need to panic about this,that gas won’t get into your vascular system and kill you. It is outside your organs and has to slowly work it’s way out. In the meantime it feels very strange to roll over and have this gas bubble it’s way around your abdominal organs to rest at the highest point it can get to.

The really strange thing about this gas is, that when it lodges up under your diaphragm, (a big, flat muscle that separates your chest from your abdomen and helps you breathe), you get a referred pain in your shoulder. This is thought to be because of irritation to the phrenic nerve which innervates your diaphragm.

There’s a few things you can do to help your body get rid of this gas and relieve the pain caused by it.

  • Drink plenty of fluids
  • Avoid constipation (see part 3 for my “pooping porridge”recipe)
  • Gentle massage of your abdomen – always in a clockwise direction
  • Drawing your legs up to your chest when lying flat on your back, if this does not cause you excessive pain.
  • Heat packs
  • Gentle walking
  • Lying on your side when resting – the gas will move to the highest point, hopefully reducing the irritation of your diaphragm
  • A drug called simethicone  (marketed as De-Gas in Australia) – check with your Doctor first.
  • Getting off the opioids as quickly as you can – opioids slow your intestinal system and you want that moving to help gas movement.

***

Getting back to normal

Time. Really, this is my biggest advice post surgery. Give yourself time.

It’s really hard to do. And if I need to have surgery again in the future, I will need to write this down in big letters and put it somewhere I will see constantly.

Healing will happen. Your body is an amazing, self healing machine. You didn’t grow those endometriosis lesions in a couple of weeks. Give yourself longer than that to recovery from surgery. If you break a bone in your leg, you don’t expect to run a marathon 6 weeks later. The bone might be healed, but you would give yourself time to recondition that leg and allow it to build up strength.

Do the same for yourself post endometriosis surgery. That broken leg would have been in a cast or pinned, or otherwise kept immobile. Your incisions from surgery will probably heal in 6 weeks, but you can’t rest your entire abdomen for that time. Your intestinal system keeps working, your ovaries develop follicles and ovulate, your uterus will most likely shed it’s lining at least once, if not twice in that six weeks. Your bladder will fill and empty many times. Nothing will be immobile in there.

Practice compassion towards your own body. Give it kindness and good nutrition. And most of all give it TIME.

***

I hope this series has been of some help. If you are about to undergo surgery for endometriosis (or anything else) good luck and I hope you heal quickly and the surgery achieves the desired outcome.

I linked them at the start, but to save you scrolling back to the top you can go back to part one, part two, and part three, by clicking on those links.

(Not so) fun times with Endometriosis. (Part Three – the first few days post op.)

Here is the next instalment of my series on Endometriosis. In Part One, I discussed my recent surgery, and in Part Two, I wrote about some things I did pre-surgery that helped things go as well as they could. This one is about the initial post operative experience.

As I briefly mentioned in Part One, I woke up from my anaesthetic in a fair bit of pain. The staff were lovely, and were quite determined to get me down to no pain. Now this is something most FibroWarriors are unfamiliar with.

I am fairly lucky as far as my Fibromyalgia pain goes. If I’m good with my diet, supplements and self care, I generally function at a constant 2 or 3 out of 10. I know there are a lot of FibroWarriors that are having to deal with constant pain levels much higher than that. But the idea of getting my pain to zero, is kind of laughable. I am not good at lying to people at the best of times, but coming out of an anaesthetic meant that it was virtually impossible. So when they are asking me what level my pain was, I responded honestly. The difference is, that while I would have been happy for them to just get my pain down to a 2 or 3, they wanted it at one or zero.

I’ll be honest, they did not succeed, but the anaesthetic wore off enough for me to convince them that my pain was low enough to stop giving me drugs.

Tips for while you are still at the hospital

I don’t really have a lot of tips for post operative stuff while still at the hospital. Of course there are the things that should be common sense and basic human decency. Follow the nurses’ instructions, be polite even if you are in pain. Use your manners, and remember that ALL of the hospital staff are people doing their jobs. There is never an excuse to be rude or abusive, especially towards the very people who are trying to help you.

They will expect you to eat and drink (and keep it down), dress yourself (at least to the level that you normally can) and go to the toilet before they will discharge you. This isn’t them being difficult, it helps them to assess if you are okay to be discharged. If you can’t do any of those things, it might indicate that you need to be monitored for longer than normal. It might just mean you need a few more hours, or it could be an indicator of something more serious. Don’t kick up a stink if they want to keep you, they are recommending the best thing for your health.

Don’t be afraid to ask the nurses for help. If you need an ice-pack or a heat-pack , or your pain levels have gone up, or you feel nauseated, talk to them. They would much prefer to get you a vomit bag and you end up not needing it, versus you trying to fight through it and vomiting on the bed/chair/floor. Just be polite and make requests rather than demands.

Being discharged

Check that you understand the discharge instructions, ask questions if you need to.

Check if you need to collect any medications from the pharmacy. I was lucky that it was pretty quiet when I was being discharged, and one of the lovely nurses took my prescription down to the hospital pharmacy to be filled, so that it would be ready for the Knight to collect once he arrived.

If it is not already recorded on your discharge information, ask the nurses to write down what medication/s you have had and at what time/s. This will help you take your next dose at the appropriate time.

If you have a long drive home, use the bathroom – a full bladder is not a fun thing to have so soon after surgery.

Travelling home

I strongly recommend a cushion or a piece of foam for the car seat. Also a small soft pillow that you can place between the seat-belt and your abdomen. Make sure it is small enough to not interfere with safety, but enough to provide a bit of cushioning.

If you are prone to travel sickness, make sure you have a bucket or a bag just in case. If you do vomit – call the hospital for guidance.

At home

Check what time you are able to take the next pain relief medication. Write it down and set an alarm. Does it need to be with food? If so, have something ready like a piece of fruit or some yogurt or one of those tasty high fibre treats you made when following my pre-op advice!

For the next 48 hours (at the very least!) take your pain relief when the next scheduled dose is due. Don’t muck about with post surgical pain. There is a valid reason why your body is giving you pain signals, it’s to make you be still so you can heal. But we, as intelligent humans are able to make the decision to be still without having pain, so take the medication!

Post surgical pain is much easier to keep down if you take the doses as prescribed, rather than waiting for it to completely wear off then trying to get it back under control. If you wait until the pain is high again, you will often need to take more medications and at a higher dose than you would have otherwise.

Avoiding constipation

You will likely be prescribed some sort of opioid medication. One very common side-effect of opioids is constipation.

Trust me, constipation post pelvic surgery is something you want to avoid.

Here are some tips for helping reduce the chance of developing constipation:

  • Eat high fibre foods. Lots of vegetables, whole grains (if you tolerate them) and fruit.
  • Stay hydrated. Drink lots of water or herbal tea, and keep caffeine to a minimum.
  • Add supplements that draw water into your stools – things like chia seeds and psyillum husks. See below for a recipe for a chia seed pudding that the knight has nicknamed “Pooping porridge”. It’s really quite tasty despite it’s name!
  • Use a foot stool or “squatty potty” to place your feet on when you sit on the toilet – raising your knees above your pelvis helps to put everything in the right position so you can pass stool with minimal straining.
  • Gentle massage of your abdomen and pelvic area – do this very gently and always in a clockwise motion to encourage things to move in the right direction. Not only will this help the movement of your bowels, it will help your body to get rid of the excess gas from the surgery that will have been left behind.
  • If these things don’t work, talk to your pharmacist or doctor about stool softeners and laxatives or consider using a microlax enema. They aren’t much fun, but the longer the stool sits in your lower bowel, the more water will be drawn out of it, and the harder it will be to pass – so don’t leave it too long!
Pooping Porridge
  • 1 apple
  • 1/2 cup water
  • 1/2 cup coconut cream
  • 2 tbsp chia seeds (Australian metric tbsp = 20ml)
  • 1 tsp psyillum husks
  • spices to taste – I like cinnamon and cloves or vanilla
  1. Chop apple into small pieces and stew for 15 mins in a small saucepan in the water (you could also use pre-made stewed apple).
  2. Add coconut cream and gently warm
  3. Remove from heat and stir in remaining ingredients. Allow it to sit for a while for the chia seeds and psyillum husks to absorb the water. Adjust to your preference – add more water if it is too thick, more chia seeds if too thin.
  4. Serve with some nuts or extra fruit, or just eat it as is – enjoy!

Try it with different fruits such as mango, pear or berries.

In my next post, I’ll talk about movement, exercise, referred pains and trying to get back to normal.

Go back to Part 1, or Part 2, or forward to Part 4 and my recently added addendum.

(Not so) fun times with Endometriosis. (Part Two- advice for pre-op.)

I started series of posts with Part One being a description of my experience with surgery. This part (and so far, I’m not sure how many parts it will be!) is going to be my tips for preparing yourself mentally and physically for surgery and for the post operative time. This is aimed towards surgery for endometriosis, but some of the tips will be useful for other surgeries too.

Obviously, not all of these tips are going to work for everyone. Some people have children, or work or have other health conditions that will change their needs. I really shouldn’t have to say this, but if any of your health care professionals tells you to do something different to this advice – FOLLOW THEIR ADVICE!! I don’t know your body or your other health conditions. I only know mine!

1. Pelvic floor exercises

You are about to undergo a surgery that is going to poke around in your pelvis. If you make that area as strong as you can, it will heal faster. There will be a healthier vascular system – this will both assist in controlling blood loss from incisions and improving blood flow to the area afterwards to assist healing and removal of toxins.

Don’t just do kegels though. Your pelvic floor is basically a big sling for your internal organs (a simplified explanation), and you need to work on all of it. Your body alignment, your pelvis, how you sit and stand all have an affect on your pelvic floor. I did the pelvic floor exercises from healthymoving.com, but I had already signed up for her coaching and challenge program so it didn’t cost me anything extra. Alternatively, an exercise physiologist or physiotherapist can give you specific exercises to help strengthen your pelvic floor.

The other great bonus to this, is that a strong pelvic floor can help with bladder or bowel incontinence, reduce the risk of prolapse and improve your sex life! There is basically no down side to improving your pelvic floor strength.

2. Good nutrition

Although today’s anaesthetic drugs are really quite safe in comparison to days gone by, they are still drugs that your body has to process and remove. For the most part, once you wake up and have breathed out the last of any gaseous anaesthetic you might have had, this will be done via your liver and kidneys and excreted via your bladder and bowel. (Don’t be surprised if your motions smell strange for a few days!)

Unless you have a liver or kidney dysfunction, removal of those drugs will happen no matter what you eat. However, your body is busy doing an awful lot post surgery. It has incisions to heal, hormones to regulate – especially if your ovaries were involved, pain to manage and pain relief medications to process.

If you give your body good nutrition in the weeks leading up to your surgery your organs will be in a better state to deal with this. You will use less ATP (the molecule that cells use for energy) and the process will be easier. Good nutrition is vital for managing the FibroTroll, and is especially important both pre- and post- surgery. I’ve written quite a lot about this, you can find some of those posts here, here, here and here.

If you can, make food for the freezer. If you have a couple of weeks, this can be done by doubling your normal recipes and then putting half in the freezer. If you don’t have that sort of time, see if you can get a friend or family member to help you and spend a day or afternoon making meals for the freezer.

Make sure you have high fibre appealing snacks available. It is not unusual for anaesthetic and pain relief drugs to make you nauseated and/or constipated. You might not feel like eating, so making sure there is something tasty to eat will help. The high fibre will help prevent constipation. Trust me on this, constipation following pelvic surgery is not something you want to try if you can avoid it.

3. Prepare post surgery entertainment.

If you are like me, you will get bored when you can’t get up and move around easily. I tend to think I’m better than I am, and do things too soon and delay my healing. To avoid this, it is good to find some things to do that you will enjoy and that will stop you doing other things.

Find some good books, re-read old favourites or try new titles from authors you already know you like.

If you like to knit or crochet, find a simple but appealing pattern to try. Get the yarn and needles or hooks together, put them in a bag or basket or box with some scissors, the pattern, stitch markers, darning needle and anything else you might need.

Indulge in a game on your phone or tablet if you enjoy that sort of thing. Remember that blue light will interfere with your sleep, and you need sleep to heal, so try to avoid doing that in the evenings.

Watch a new series, or re-watch an old favourite. This is a perfect excuse to binge on Buffy the Vampire Slayer or Dr Who or something similar. Again, remember not to do this in the evenings.

4. Do a spring clean.

I know it’s hard to keep on top of housework when you have a chronic illness. But it is going to be worse post surgery. So doing as much as you can now, will save on things to do afterwards.

Make sure you have plenty of clean pyjamas and loose fitting pants. If the weather is cold, make sure there’s plenty of clean warm clothing. If the weather is warm then loose fitting dresses can me your friend. Anything that avoids putting pressure across your abdomen is good.

Change the linen on the bed, so you have lovely clean sheets post surgery.

5. Pack an overnight bag.

My surgeries have always been day surgery. Meaning I have been discharged the same day and not had to stay overnight. But it pays to be prepared. If there is a complication or your surgery gets delayed due to someone else’s emergency, then there is a chance that the surgeon will want you to stay overnight.

I keep it simple. Clean underwear, change of clothes – I choose something that I am also comfortable sleeping in. Toothbrush and toothpaste, body wash and moisturiser. I find my skin gets very dry in air-conditioning, so I do like to pack a moisturiser. Sanitary pads. I don’t like the ones that hospitals supply, so I bring my own. A book or a crochet project.

Bring your own food if you have lots of dietary restrictions like I do. The last thing you want post surgery is an IBS attack to deal with as well!

6. Organise transport.

This is super important. It is simply not safe for you or the other drivers on the road to drive yourself home from hospital. If you live alone, try to organise someone to be with you for the first 24 hours at least. If this isn’t possible, discuss this with your doctor. They might be able to keep you overnight in hospital or put you on to a service provider that can help.

7. Make arrangements for important commitments.

A few days after I had booked my surgery, a federal election was called and the date scheduled for the day after my surgery. There was absolutely no way I was going to walk down and back up the stairs of my high-set house, let alone think about something like voting the day after surgery.

So, I organised a postal vote, which was great as I could sit in front of my laptop with the voting card and actually research the policies of every candidate in my electorate.

8. Mindfulness

Meditation and mindfulness can go a long way in helping your healing. If you are at all anxious about surgery, I strongly suggest talking to a psychologist if possible and practising mindfulness. Anxiety increases cortisol which can reduce or delay healing. It can also interfere with anaesthetic drugs, meaning you need more drugs to achieve the same result.

Deep breathing techniques where your exhalation (out breath) is longer than you inhalation (in breath) helps to calm the nervous system and activate the parasympathetic nervous system (the calming side of your nervous system). If you can, practice this when you are in the pre-op room. It gives you something to do when no-one is poking at you, and will make the anaesthetic smoother and easier on you (and your anaesthetist!)

But don’t just start in the hospital. Start now. Really. Even just taking a couple of moments to focus on your breathing will make a difference in the long run. I challenge you when you finish reading this, don’t just go on to the next thing you were going to do. Take a deep breath, count slowly to 5 while you do, then slowly let it out again, try and make the exhale twice as long – i. e. count to 10. You might need to purse your lips or do something else to slow your exhale down.

Then do it again. Do it 10 times. Then do it again tomorrow. You don’t have to sit for 20 minutes and meditate (although it’s awesome if you can), start with the breathing and go from there.

Good luck!

Go back to Part 1 or forward to Part 3 or skip to Part 4 and the addendum.

(Not so) fun times with Endometriosis. (Part One).

As I’ve mentioned before, the FibroTroll has a lot of friends (co-morbid conditions). One of the many that I also have the “joy” of knowing, is endometriosis. I wrote a little about it on my post about dysmenorrhoea, and I’m going to write about it again today. In a lot more detail because I’ve just had my second surgery specifically for this condition.

What is Endometriosis?

Endometriosis is a condition where the endometrial cells (the cells that line the uterus) grow somewhere outside of the uterus. Most commonly, this is in the pelvis, around the reproductive organs. However, it can grow almost anywhere. It can affect the bladder, bowel, muscles, lungs, brain and other organs.

The symptoms most commonly are associated with menstruation and the reproductive organs, including long, heavy, painful periods, infertility, pain during sex, fatigue and diarrhoea and/or constipation. It can cause pelvic pain and increase ovulation pain. Symptoms can be associated with where the endometriosis is located, but there is no correlation between the amount of endometriosis and the severity of symptoms. For a more detailed explanation, I have found https://www.endometriosisaustralia.org/ to be particularly helpful.

What can be done?

Diagnosis and treatment generally involve surgery. Some treatment options include the oral contraceptive pill or the Mirena IUD. They are not right for me, but do work for others. I had surgery 5 years ago as it had been suspected for quite some time that I had endometriosis. It was confirmed and then removed. Unfortunately, having surgery to remove endometriosis, does not guarantee that it won’t grow back.

Why did I have another surgery?

Since November last year, I have been having some fairly regular bouts of super intense pelvic pain. I had them investigated and didn’t get a satisfactory answer or treatment plan with conservative management, so I headed back to the Gynaecologist at the start of April and got myself booked in for another exploratory laparoscopy. I had also managed to grow another polyp in my uterus and an endometrial cyst on my ovary, so we decided that he would remove them at the same time.

The surgery is why I’ve been a little quiet on here. On the plus side, I have been recovering much better this time around and I think I have some insight as to why. However, this is turning into a much longer post than I intended, so I’ll save that for part 2!

I know from my various support groups, that there are many people who have both Fibromyalgia and Endometriosis and it’s likely that some people have not yet been diagnosed with one or the other. So I am going to share my experience.

Public vs private hospital system

In Australia we have a public health system. This is wonderful and literally saves lives. However, the waiting lists can be long for non-emergency surgery, so we choose to have private health insurance. I am one of the lucky ones, in that my Knight in Tarnished Armour earns enough that we were able to keep this when I stopped working.

One frustrating thing with private health insurance in Australia, is that the insurance companies only pay a certain amount for any given procedure. Medicare pays for 75% of it and the insurance company pays the remainder. If your specialist charges more than the scheduled fee, then you will have to pay the difference. The good news is, that many specialists choose to not charge above the scheduled fee and your insurance company should be able to give you a list of specialists who are “no gap providers”. Please note: I don’t know how insurance works in other countries – feel free to comment if you like!

This is actually how I found my current gynaecologist when I had my first surgery 5 years ago. He turned out to be a kind, caring doctor who listens and genuinely wants to help.

Booking surgery

I saw my gynaecologist at the start of April and we booked the surgery for the 17th of May at the Greenslopes Private Hospital. It probably could have been a bit sooner, but I didn’t want to ruin our little break by having surgery just before it! That is probably the biggest benefit to private health insurance. Through the public system, the wait for this type of surgery is around 6-9 months. Then if your time comes up, if it doesn’t suit you might be waiting a few months more.

Anaesthetic Specialist

I was booked in and told who my anaesthetist would be and was very happy to discover it was the same awesome doctor I had last year for my polyp removal. I woke up very nicely from that anaesthetic, so I was happy it would be her again.

For those who aren’t aware, the anaesthetist is a specialist in their own right. They charge separately, and while no-gap anaesthetists probably exist, this one is not one. She does have an arrangement with my health insurer, where I pay a lot less, so if you are looking into health insurance it is worth keeping this in mind.

She rang me the night before surgery. I don’t know if this is standard practice, but it’s what she does. We discussed my Fibromyalgia and my need for pain relief, and that I woke up terribly from the anaesthetic 5 years ago, but beautifully from hers last year. We discussed my reactions to certain antibiotics and other intolerances. Again, another kind, caring doctor who genuinely wants to help her patients.

Checking in to hospital

I was sent an online check-in link from the hospital a week before the surgery, which is great, because then you can go to your cupboard and look at all your supplements without having to try and remember them at the hospital! My only tip in this regard is to not trust your FibroTroll brain to get the date right – if you get it wrong the poor admin staff have to fix your stuff up!

My admission time was 1:30 pm, so I could have breakfast which I was very happy about. I made sure to have a high fibre breakfast with a good amount of protein and healthy fats so I would feel full for as long as possible. Please be aware that if you are booked for surgery and your fasting guidelines are different, then follow what your hospital/doctor says!

We arrived a little early (a bit of a miracle for us!) so there was a short wait after the last of the paperwork was filled in. A nurse came and admitted me. she did a bunch of pre-op tests. This included height, weight, blood pressure, temperature and a urine test. Naturally, given that they will be poking around your reproductive organs, they do want to be sure you aren’t pregnant or have any other issues beforehand.

I was then given my identification bracelets, a hospital gown, disposable underwear, compression stockings, and a hair cap. Quite the fashion statement! They also brought me a couple of lovely warm blankets – they literally keep them in a warmer, so they are absolutely delightful when they go on!

The Knight hung out with me for a while and we played some games. We were interrupted every now and again by a nurse coming to ask me questions. It seems to be protocol that a number of different people ask the same questions. Presumably to avoid any mistakes, and I find it reassuring that they are not complacent. Once it was time for me to go to surgery, the Knight took the things I wouldn’t need post surgery home and headed back to work.

Pre-op stage

In the pre-op room I was asked the same questions again, then the anaesthetist placed a canula in my hand and the surgeon came and spoke to me. Then I was wheeled into surgery, the anaesthetist gave me something (I forgot to ask what- I know they joked it was champagne!) – and I remember very little beyond that point. I shifted myself onto the surgery table, I’m not even sure I got myself into the right place! Then everything is blank.

The operation

Obviously I was not awake during this part of the proceedings.

The polyp was removed first via a fancy instrument called a Myosure threaded up through my cervix. I had this procedure last year and when it is the only procedure, it is minimally invasive and not overly painful on recovery.

Then on to the endometriosis removal. Basically what they do, is cut a hole in your belly button and in other places around your abdomen – in my case it was 3 other incisions. They pump your abdomen full of gas so they can see, then insert cameras and lights and instruments. Then the surgeon does the tricky things that he (or she) has trained for many years to do. They have a look around (hence why they call it exploratory), and in my case remove a cyst off my ovary and a bunch of endometriosis.

They squeeze most of the air back out again, in a manner that I can only imagine as an amusing oversized whoopee cushion, but is probably not quite the case.

Then they close you up, and in my case apply a waterproof dressing/glue over the incisions and wake you up.

Post op stage

The next thing I remember is waking up in the post-op room with some nurses being lovely again and trying to get my pain levels down. I’m not going to lie, the pain was pretty high, but they were determined to help. Thankfully, they succeeded and it wasn’t long before I was moved again.

I brought my own food due to my food intolerances, but they brought me a plate of fruit and a green tea to go with it.

Once I had eaten, and dressed and urinated (they like to make sure everything is working properly), it was time to go home.

One of the helpful staff at Greenslopes took my pain medicine prescription down to the pharmacy so that the Knight could pick it up without having to wait. Then they wheeled me down to the car and I headed home.

The next few days weren’t much fun, but I will go into that in more detail in my next post. I’ll also share my tips for pre- and post- op things to do (or not to do!)

Go to Part 2 or Part 3 or Part 4 or the addendum.

Vestibular and Balance Disorders

Vestibular and balance disorders are another of the many co-morbid conditions that are often associated with Fibromyalgia.

The vestibular system is the parts of the brain that assist with balance and eye movement. It’s the system that allows you to move your head while walking and not fall over (most of the time). It is also the system that will cause motion sickness and can be responsible for feelings of dizziness.

The prevailing theory behind motion sickness is an incongruity between what the inner ear is sensing and what the eye is seeing. For this reason it often helps to look out a window in a car or at the horizon when on a boat.

I used to be one of those annoying people who most of the time could read a book in the car or hop on a boat without the slightest twinge of sickness. Since the FibroTroll came to stay, this is definitely not the case anymore.

I get regular dizzy spells, or “head spins” when I stand up. I usually get nauseated if I’m in the car for more than 20 minutes – sometimes from the moment it starts moving until an hour after it stops.

For my mother’s 60th birthday we went whale watching and Oh My Goodness, that was an experience! They are simply the most amazing creatures and fascinating to watch. Unfortunately, it just wasn’t enough to stop the horrendous seasickness from taking hold. I failed to get any really impressive pictures as I spent much of the trip vomiting into those little bags.

Whale Watching

Having issues with my vestibular system also affects my balance. I can no longer safely climb a ladder or even pick something up off the floor and stand straight back up without having something to hold onto while the dizziness passes.

I’ve had all the tests, and with the usual results for someone with Fibromyalgia, that is, nothing abnormal showed up. Even my MRI showed a perfectly normal brain – much to the disappointment of my brother, to whom I can now prove that not only do I have a brain, but it is normal! Ah sibling love, it’s one of the best kind 🙂

So my GP referred me to a vestibular physiotherapist. I had no idea such a specialist even existed. I had no idea what to expect, but I figured I would give it a go.

She was a pleasant lady, who seemed as though she really knew what she was on about. She ran through some testing of my balance and moved my head while I looked at a stationary spot and a few other tests. She gave me some exercises and patiently walked me through them so I knew I was doing them correctly. She included print outs and little laminated cards to do the exercises at home. To start with everything went well.

But as with many things, I pushed to hard. I so desperately wanted to get better, even if it was just this one thing, that I did the exercises. I went straight from none of them, to all of them, the number of repetitions she told me to do, and the number of times she told me to do them. And I triggered a flare. I also managed to get sinusitis and an inner ear infection, which made doing the exercises incredibly difficult and even painful. So I stopped. I went through a lot of guilt about not doing them and kept trying and failing. I now realise that I was also struggling with depression.

I’ve learnt a lot about myself and about pacing since then. My regular physiotherapist, Bobby-Jo (who I talk a little about here) is much more understanding about the FibroTroll. She doesn’t want me to upset the FibroTroll any more than I do. She gives me very simple exercises and she is always happy if I have managed even one rep a day. If I have done more general exercise and don’t do her specific ones, then she is also super encouraging about that. I have complained about set backs and she gives me just the right amount of sympathy – then points out that six months ago, I struggled to do one rep a day of each of the exercises, now I do 3-8 reps, sometimes multiple times in a day. And if I have to drop back to 1 rep after a flare, then that’s ok, but I’ll probably build back up faster than I did the previous time. And you know what? – She’s right. The other thing that Bobby-Jo reminds me of is that:

Progress at a crawl is still progress.

So, with that in mind, I’m going to dig out the print outs I have from the vestibular physiotherapist. Only this time, I will start with one exercise, once per day and build up from there. And hopefully, in the months to come, I’ll build up to the number the vestibular therapist wanted me to do – and then I’ll feel brave enough to go back!

Anxiety and Depression

I have a confession to make. A lot of the time, I fake it. No, not my fibromyalgia. When I go out, most of the time, I fake being well. I usually tell people it’s a good day, and I let people make whatever assumption they like. I pretend that I’m not hurting, and that it’s not a struggle to  follow the conversation.

I’ve been doing this for a long time. The downside is, that I started to get very good at hiding things. I was hiding my fatigue behind make-up and medication. Hiding my pain and anxiety behind happy chatter and my depression behind a fake smile.

I had noticed that I was having the occasional flat day, but I figured that having a chronic illness I was bound to feel a bit down from time to time. I smiled and said c’est la vie when people asked how I was. They marvelled at how well I was dealing with things and inside I wanted to scream and cry.

I did it so well, I didn’t even realise how bad I was. Until one day, I had to make my knight stay home from work because the mower man was coming and I was having a panic attack. He’s a nice man and has been mowing our lawn for years, and other than liking to talk too much he isn’t the slightest bit threatening. I realised that I needed help.

It still took me a few months to find the right person and actually take that step of booking an appointment. But it was a step worth taking.

I have been seeing my psychologist, Julie, for about six months and she is worth her weight in gold. I had not realised just how far down the depression slope I had slid. I realised that the occasional flat day was actually the days that I was aware of my mood – and that the problem had been running much deeper than that.

Now I want to be completely clear. Fibromyalgia IS NOT CAUSED by anxiety or depression. It is very common that sufferers of any chronic pain or health condition will also suffer from anxiety and/or depression. It is a very common co-morbid condition.

While I don’t think it has made much of a difference in regards to my pain or fatigue, I am certainly in a better head space. The advantage to this, is that then I am more able to do the things that do help me with pain and fatigue. I am more motivated and organised to make GAPS friendly foods that are also tasty and interesting. I am doing my yoga and the exercises my physiotherapist gave me. I survived Christmas, by having a plan (but dropped the ball after that, so it’s still a work in progress).

And I started writing this blog. The only reason this blog exists, is because Julie encouraged me to start using writing as therapy. I extended that out to writing a blog. Partly because if I know that someone might be reading this, then I’ll actually get myself motivated to write something. And partly because it would be great if something I wrote, actually helped someone.

Mental health does not get the positive attention it deserves. There is a negative stigma about seeking help with mental health in the general community. This stigma becomes a double-edged sword for Fibrowarriors. Too many people are told that their fibromyalgia or chronic fatigue symptoms are ‘all in their head’ and dismissed. This sometimes leads to a backlash against seeking mental health. When you know that your symptoms are real, but the very person you are trusting with your health tells you that they are not, that trust becomes weak.

People retreat behind their defensive wall, and decide that because their symptoms are real (AND THEY ARE!) then they don’t need mental help, they just need physical help.

And this is where I strongly disagree. Suffering from constant pain and fatigue is draining, both physically and mentally. Losing your independence, your identity, your job and your ability to see friends is heartbreaking. For some, they lose their partner and/or children. Having cognitive dysfunction reduces confidence and the ability to interact. Having a disease that is poorly understood, with treatment currently consisting of a trial and error regime of symptom masking medication is not an easy burden.

Remember, the ability to laugh at something does not mean you are not well on the way to a potentially serious depressive state.

So get some help.  Go to your GP. Ask for a mental health plan (in Australia) and a referral. Plug “Psychologists for chronic pain in (insert your city here)” into google. Pick up the phone and make an appointment. It might just be the most important phone call you ever make.

 

 

 

 

 

Migraines and persistent headaches

The FibroTroll has another group of regular friends (co-morbid conditions). They have a whole little gang of their own. They come in the form of migraines and multiple different types of headaches.

Here’s a little breakdown of the most common members of the Troll’s headache gang:

  • Tension headaches: These commonly start at the base of the neck and will work their way forward so they eventually encompass the whole head. If I get one of these, I tend to reach for the ibuprofen and get my knight in tarnished armour to massage my neck.
  • Dehydration headaches: Can be any part of the head, usually they will improve if you bend over or lie down. Movement will usually aggravate them. I rarely get these as I make a conscious effort to avoid become dehydrated. The best treatment is to rehydrate. Do this in stages, if you drink a litre of water in one go, it will not be as effective as if you drink a small glass every 10 mins. You will also need to replace electrolytes, I do not tolerate the artificial flavourings in commercial electrolyte drinks, so I prefer coconut water. There’s also loads of recipes online for homemade rehydration drinks.
  • Allergy headaches: Often seasonal. They are usually generalised and accompanied by sore, itchy, or runny eyes, and a runny nose or sneezing. Antihistamines can be of more use than analgesics for this type of headache.
  •  Hunger headaches: Mine are usually accompanied by being “hangry” (so hungry that you are cranky). Low blood sugar can be the cause of these. Having a sweet drink, then eating some food is the best treatment.
  • Medication or Caffeine withdrawal headaches: Best managed by not being too reliant on medications (easier said than done). Early on in my FibroTroll fighting days, I had to cut out the caffeine and the resultant headaches were not fun to get through. Analgesics and rest got me there eventually.
  • Eyestrain headaches. Commonly in and around the eyes. Often caused by spending too long staring at a screen or driving long distances.
  • And one I call The Troll headache: I haven’t found an official name for this headache, but it is a distinct one that I recognise as different to the others. It has the neck tension, but also tends to sit in around the back of the eyes. It feels as though someone has stuffed my head full of cotton wool, but without taking anything out to make room. The only things that help this one are caffeine and sleep. I usually try sleep first, but it can hang around for a few days and if it does, the only option is caffeine.

There are many more members of the headache gang, far more than I realised when I was younger. They include (but are not limited to): Cluster headaches, vascular headaches, TSS, altitude headaches, brain tumours, fever, trauma and the list goes on. But the big Mob Boss of headaches is the good old Migraine.

The Migraine is a good friend of the FibroTroll. They both have the same great enjoyment of effing your life up as best they can. My migraines manifest as an all over headache, including severe neck tension, I am sensitive to movement (mine and those around me moving too fast) light and noise and if I don’t get analgesics into me ASAP, it will progress to vomiting.

There is a very good article that goes into migraines in much more detail. I wouldn’t do it justice if I tried.

A migraine is one of the few times I will resort to codeine. I will have panadeine together with ibuprofen (check with your doctor if this is ok for you to do before you do it!) and then lie down in a dark room with as little noise as possible. I’ll use an icepack and heat packs and move them around my head and neck. I can’t explain why this helps, but it seems to for me.

These are the things I do to help reduce the occurrence of headaches and migraines.

  • Try to get adequate sleep. Read more about improving sleep quality here.
  • I see my chiropractor every 2-3 weeks and my physiotherapist every 3-4 weeks.
  • Move regularly. I don’t mean go for a run. I mean get up, stretch, do yoga or Tai Chi.A sedentary lifestyle can predispose you to headaches, yet it is hard to get adequate movement when you are battling the FibroTroll.
  • Meditate. This helps reduce stress.
  • Move your eyes. If staring at a screen, or anything that stays a similar distance away, regularly look around. Focus on things that are different distances away. Put your hand up in front of your face and focus on it, then focus on something in the distance.
  • Drink plenty of fluids. Have a drink of water every time you pee. And if you drink caffeine or alcohol, a glass of water for every one of those drinks.
  • Eat regular nutritious meals.
  • Avoid too much sugar and processed foods. Keep a food diary and try and see if there is a connection to your migraines. Many people find that food can be a trigger.
  • CoQ10 (co-enzyme Q10) is an enzyme found in the body’s cells. A few published research papers have shown that for some people supplementation with CoQ10 can reduce the frequency and severity of migraines. Some of the abstracts for these studies can be found here. CoQ10 can have serious interactions with some medications, so check with your health care professional before taking it.
  • Magnesium supplementation in the form of an oral powder and Epsom salts in the bath. the supplement I like is called Energy X, made by Metagenics. (I have no affiliation with Metagenics, I just really like this product.). It has a really good mix of B vitamins and other vitamins and minerals that I find helpful. As an added bonus it is flavoured with cocoa – yum!

There are medications available that can help to reduce the occurrence of migraines. I personally choose not to take preventative medications as I find that these management techniques mean I rarely get them.

I do get headaches often, but the more I learn to listen to my body, the better I am at identifying the type of headache and the treatment that is most likely to be effective.

For preventing allergy headaches though – I got nothin’. If you have any tips, I’d love to hear them!

 

 

 

 

Sleep Disturbances

Insomnia, Restless Leg Syndrome, Sleep apnoea and non-restorative sleep are some of the common sleep disorders that occur as co-morbid conditions with fibromyalgia. As you can imagine, having issues with sleep does nothing to help the fatigue that already comes with being in chronic pain.

Insomnia is the inability to fall asleep. Such a simple definition which does not convey the frustration and helplessness that comes with it. Combine it with chronic pain and it is soul breaking.

Restless leg syndrome is characterised by an overwhelming urge to move the legs, particularly when trying to fall asleep. It has no known cause or treatment as yet. Thankfully, while I had started to develop signs of restless leg syndrome, for me it seemed to be associated with a deficiency in, or a higher requirement for magnesium, as it does not happen while I am taking magnesium supplementation. If you suffer from this, it’s probably worth trying magnesium supplementation. I am in no way saying it will cure it, I am just saying that it might help.

Sleep apnoea is a condition where you stop breathing during sleep. Suffers might be aware of it, as eventually the brain, in a desperate attempt not to die, will wake you up. But sometimes it doesn’t wake all the way up. The brain might only wake you just enough so that you breathe again. Either way it contributes to not sleeping properly.  Treatment varies from splints to pull your jaw forward so you don’t block your own trachea, to CPAP machines that use positive pressure air to force your airways to stay open. As far as I know, I only suffer from this when I have a head cold.

For me, the main sleep problem I have is non-restorative sleep. I generally don’t have too much trouble falling asleep, but staying asleep and waking feeling rested seem to be beyond me.

I find if I nap during the day, I then am unable to fall asleep at night. So as much as I want to, on a regular day, I avoid naps.

The main treatment for non-restorative sleep is to improve sleep quality. I take a multi-faceted approach to this:

  • Cutting down/out caffeine. I found I was needing more and more coffee/tea for it to help. The more caffeine I drank, the worse I would sleep, so I would have more caffeine and the cycle would continue. Cutting out the caffeine means that when I really need it – like for a function or particular type of headache, then it actually does something and I can have it early enough in the day that it doesn’t affect my sleep.
  • A comfortable mattress and pillow. Get the best quality you can afford. We have a Zen mattress that has a latex top, it helps reduce pressure on painful joints. I previously used a foam pillow, but I’ve recently been trialling a buckwheat pillow. I get a thumping in my ear when I try to lie on my side, and I find that the buckwheat pillow lets me dig a little hole for my ear to sit over and that stops the thumping so I can relax.
  • Use bolsters and cushions. Use as many as you need to improve comfort. Put a pillow between your knees if you are a side sleeper, or under them if you sleep on your back. I have issues with my shoulders, so I have a small cushion that I prop my hand up on when I lie on my side, and this relieves most of the pressure on my shoulder joint.
  • Quality linen in natural fibres. I choose bamboo or cotton. It really does make a difference. Also change them regularly. This can be hard when you have a chronic illness, but it really is worth it overall.
  • Comfortable bed-clothes. Gone are the cute little slip nighties that used to bunch up around my waist and leave my shoulders out to the cold. Now I have comfortable cotton or fleece PJ’s (depending on the time of year). The bonus to this, is I can answer the door when the courier delivers parcels at 7 am without a mad dash to cover myself up! In winter time, I wear socks and a beanie. I don’t care what others think, I just want to be warm.
  • Appropriate bedding for the temperature. My darling knight needs the air-conditioning on pretty much from October to April. I however, get cold super easily. So we have separate single sized doonas. In summer, I have a light bamboo one (balances out the tarnished knight’s air-con), the knight uses just an empty doona case, and in winter I have a lovely wool one (and sometimes blankets as well) and the knight gets the bamboo one. It works beautifully for us, plus, there’s no fighting over the linen!
  • Regular bed time. I try to make sure that I get to bed between 9 and 9:30pm. Any later than that and I know I’m adding to tomorrow’s toll. Sometimes it’s unavoidable, but if at all possible, I try to avoid evening functions. I usually wake up multiple times throughout the night and in the morning around 6 or 7 am, I generally can’t sleep any more – regardless of when I go to bed. So 9:30pm is the limit.
  • Reducing blue light at night. I’m not very good at this one. I’m a bit addicted to technology. I do have blue light filters on all my devices, which reduces the damage of screens, but doesn’t completely stop them. I won’t allow a TV in the bedroom. If I wake in the night and can’t get back to sleep, then I am very strict about not using any devices. As tempting as it is to go online and see who else is out there suffering from insomnia, it is actually the worst thing you can do. Light inhibits production of melatonin in the pineal gland and melatonin is the hormone the regulates sleep.
  • Which brings me to – melatonin. I take a drug called Circaden every night, which is a slow release formula of melatonin. Since taking this, I have noticed that when I wake up during the night, I usually manage to get back to sleep.
  • In the morning, I try to get some sun on my face. This inhibits production of melatonin at the right time of day and helps the body to regulate many of the other hormones that are needed for homeostasis.

When I am good about my sleep routine, and nothing else goes wrong (storms, barking dogs, neighbourhood parties, etc.) then I usually get a reasonable level of sleep. I wake up with my pain at a manageable level and I can usually manage to get a few things done about the house.

If I get slack or have a function on, or something outside my control interferes with my sleep, then I tend to find that the FibroTroll is much more demanding. When this happens, I have to learn to give myself permission to rest. To not get anything productive done and simply pay the toll. If I don’t then the FibroTroll will invite his family over, and it won’t be pretty.